Boy with heart transplant receives community support

Jodi Schellenberg
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Instead of running around in playground like other preschoolers, Keaton Dirks has been in a hospital bed.

A barbecue was held to raise money for Keaton Dirks and his family. On April 9, the four-year-old underwent a heart transplant. Although the transplant went great, he will have numerous appointments in both Saskatoon and Edmonton in the future to make sure everything continues to go well.

Keaton has restrictive cardiomyopathy, which means his heart muscles didn’t work properly causing the heart to fill poorly. It then causes problems with his liver, which was enlarged, and his lungs, resulting in secondary pulmonary hypertension, a type of high blood pressure that affects the arteries in the lungs

On April 9, he went in for a heart transplant in Edmonton and since then has been getting better every week.

“He is doing great,” his mom Janelle said. “It is remarkable. He has more energy than I ever thought he would have. He is on the go constantly and it is quite remarkable. They told us he would have a lot of energy after transplant and they were not kidding. It’s great.”

The family was worried with the way the transplant and recovery was going at first that they would be in Edmonton for a long time.

“The heart was taking a while to kick in and the other problems he had on top of everything with the heart was just making his recovery, in our opinion, really slow,” Janelle said. “We thought we were almost on the verge of relocating to Edmonton just because his recovery was taking a while.

“Then, within in a week … he changed over and started to get a lot better really quickly and amazed everybody at the progress of his recovery,” she added. “He has impressed everybody because I don’t think a lot of people expected him to bounce back this quick and he did.”

After the surgery, doctors first told the family Keaton might have to be in Edmonton for eight months -- around Christmas.

They changed their minds, moving the date to September, but he surprised everyone, getting discharged a lot earlier.

“The new heart reacted so wonderfully with everything in his body that they discharged him in June and they spent almost 30 days at Ronald McDonald House in Edmonton and that was great,” Keaton’s grandmother Kathryn Dirks said.

Since the surgery, Janelle said they are just taking things day by day since transplanted organs do not last a lifetime.

“We thought he gets the new heart and he is good until he is an old man -- well, that’s not the case,” she said. “There is no shelf life on these organs, which we found out about.

“As long as all is well and he continues to do great, takes his medication and keeps up with his doctor’s appointments, he can last 25-30 years with this new heart but even if you do everything right, it depends when your body decides, ‘We know this isn’t yours,’ and the rejection starts,” she added. “That can come in a year, that can come in 25-30 years, we don’t know. Right now, we just live it day by day and try to treat him as normal as possible.”

There are some restrictions the family has to follow for the first six months after the surgery.

Doctors warned the family to be careful taking him out in public around a lot of people because his immune system is weakened and he has a higher chance of catching a virus or bacterial infection.

“You can’t put them in a bubble, so you have got to try to live life normally and use discretion -- know when you can take him to places and know when you can’t,” Janelle said. “After that, every year that he stays well with the heart, the higher his immune system will get. Right now it is at its lowest point but as the years go on and the heart is in the body, it gets easier as time goes on.”

The family will also face other challenges, which is why a Co-operators fundraising barbecue on Friday was really appreciated by the family.

“We have a fundraiser every year as part of our community involvement to try to help a particular family or a charity to raise money to help out,” Co-operator Jacqueline Goertzen said.

When the Co-operators found out about Keaton, they decided this year their barbecue would help his family with expenses related to his medical care.

“I have a soft heart for children and I love to do things like this that could help,” Goertzen said. “I can’t even imagine what this family is going through. It has been years this has been going on. If we can help somebody else out it is a great opportunity for us at the Co-operators to give back to our community.”

Kathryn said the family will have a lot of travelling expenses, since they will have to go to Edmonton for heart biopsies and to Saskatoon to get blood work done.

“His medication is extremely expensive every month -- they pay 10 per cent and the government and insurance companies cover the rest,” Kathryn said. Right now it is about $280 a month, every month. That will be in a certain degree for the rest of his life so any help they can get is greatly appreciated.

“Thanks to the whole community for everything they’ve done and the Co-operators today for having this wonderful barbecue.”

Last year the barbecue raised between $1,500 to $2,000 -- Goertzen said they were hoping to see a similar amount this year.

Importance of organ donation

One of the most important messages the Dirk family want to pass on to the community is how important it is to be an organ donor.

“A lot of people are scared about it -- our theory is you can’t take them with you when you go, what’s the point?” Janelle said. “Save someone’s life, even if it’s one person’s life.

“It doesn’t have to mean every organ or everything in your body can help a lot of people, but if you can even help one person survive, give them a second chance at life and do the best thing -- be a hero.”

Organizations: Ronald McDonald House

Geographic location: Edmonton, Saskatoon

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